When did you stop working

[jola57]

I have worked thru my wegs but only because i own my business and have other staff to carry on. I found that if I stayed home until 11 am then went to work, I could stay until 6 or even 9pm if I had a meeting, and I was fine. I work behind a computer with walking back and forth to the printer. I have one in my office but elected to use one at the back just so that I have to walk ( I make about 20 round trips so I'm happy) it doesn't compare to working for an employer, if I am feeling bad, I just pack up and go, I can't imagine doing that if I was employed. I am so very, very lucky.

[HopeinTN]

I fall into the group of not working isn't an option. However, I'm blessed that I still can and love keeping busy and not thinking about this disease. I'm 40, single and own my home and can't imagine life without a paycheck or health insurance. Worst case, I sell the house and go from there. Very scary thought though.

[Meredith]

I actually lost my job 5 years ago when I was first diagnosed with WG. Had been sick 9 months with WG's and they knew what I had because there was no way to hide it. They of course said it was a slow down in business but I knew better. Immediately got another job which I believe God found for me, unbelievable insurance/boss. No I have not told them I am sick, feel guilty sometimes but I will know when the time is OK to tell and I have missed a lot of work. I only work 1/2 a day on Fridays so thats when I go to all my doctors and have the infusions. They do not have sick days here - just bring a doctor note and no problem. I was use to the normal 40 yours per year. I went thru 120 hours (which is all you were allowed to bank at my old job) in 3 months.

[julia]

Did not work for 2 years after diag.Went back to work 1.5 yrs ago. I am able to leave when they are not busy. I can take time off for Dr appt. if I give advance notice or just leave early if we are not busy.
I do customer service, I am reluctant to apply for other positions because the customer service dept seems to be the only dept that is this flexible in slow times. My husbands work provides our health
insurance so I do not have to worry about that. I now have short and long term disability insurance which I did not have at my prev job. When we are busy I do work 40 hr weeks. I can handle it but have to rest most of the weekend. I am 51 and plan/hope to work until retirement age.

[Sangye]

I've never been able to work since being dx'ed. Thankfully I was guided to apply for disability right away, which I got after about 5 months.

[annekat]

I've continued to work at my self-employed pottery business, plus some seasonal work every winter in the plant products industry. But Wegs has taken its toll and I must really pace myself, and luckily, these work situations are flexible that way. The downside is the difficulty of making a living. I was lucky and got SS disability quite easily. Because I was making so little money on my pottery business, and had been for years, and they acknowledged that I'd actually had Wegs for some of those years, even though un-dx'ed, they didn't consider me to have really been "working" for quite awhile. My income level fell below what they consider to be work. So, the monthly disability payment helps a lot, but since I never had paid a lot into the system, it is a relatively small one, and it is still a struggle to get by. I have some ideas for making my business more efficient and getting more out of my resources.

[RudiK]

I was diagnosed 2 months after I retired, so I don't have to worry about work any more. But, having worked in a very stressful IT management job for 30+ years, I would have not been able to continue work after the diagnosis. Insurance-wise, I'm now on Medicare and so far so good, although one of my doctors have warned me that Medicare is cutting the re-imbursment and that she may have to bill me for some of the difference. While the WG didn't impact my work, it did put all of our travel plans on hold. Hopefully, we will do some travel this year and next.

[Randy]

I work full time and have done so except for about the first 6 months after I got out of the hospital. I work at a computer help desk, it's not physically demanding but is menatlly, and can be emotionally, like when I get someone who figures I should have fixed their problem yesterday. These people never used to bother me, but now they do. The WG is in remission but I think it has had a permanent effect on my nerves. Other than that, I like my job and intend to keep working at it as long as I can. A. I need the money and; B. It gets me out in contact with the rest of the world.